Saturday, December 31, 2011

Happy New Year!

It is New Years Eve and the house is quiet.  It gives me time to think back over 2011 and look forward to 2012.  Gary is working... Kayla is home from college and enjoying time with her friends... Noah is with the guys at his friends house... Even Mckenna is spending the night!  Ayden Jane and I have the house to ourselves.  Of course, she will likely sleep with me anyway so it won't seem too empty.

Looking back:  Gary is settled at work.  That is a short sentence, but it took years in the making.  Trust me.

Kayla is a Clemson student.  2011 was a big year of transition for her.  She graduated from HS and lived somewhere other than Pawleys Island for the first time since she was 3!  She has made so many new friends and learned so many new things.  She is still our Kayla, but she is becoming more and more her own person with a giant world open to her.  It's hard to explain.

Noah has made some tough choices.  Some of them good and some of them not, but all of them have taught him much.  He has taken on a slightly new role of oldest in Kayla's absence and done a wonderful job of caring for his little sisters.  Ayden Jane trusts him completely and adore's his attention.  I think he will be happy to leave 2011 behind, but I believe 2012 holds great things for him!

2011 was great to Mckenna.  She finished 4th grade and entered 5th confident and happy.  She has discovered that not only is she talented athletically, but that she loves art.  She can still hang with the boys on the soccer team, but has made solid friendships with some girls.  She is growing up so fast!

Ayden Jane accomplished more that I could have imagined in 2011.  We are glad to put the illness of the fall behind us, but I can't let the rough couple of months dampened my awe of what she has learned.  Last winter she was still 'little'.  She was part toddler, part preschooler.  She is all out preschooler now.  She is active and social.  She has friends, she is learning and happy and healthy.  She is far more a typical 4 year old than a 4 yr old little girl with PWS.

So, what about 2012?  I plan to focus on prayer, getting back to running, being a good wife, enjoying all the time I can with my kids while they are around and reading a few books in whatever time I can find.  Oh, and of course, keeping up with this blog!

Thursday, December 29, 2011

Tuesday, December 27, 2011

Scootermania

video

I have much to say, but I am too busy heading back outside to play with these two to say it.  More pictures and updates to come.

Sunday, December 25, 2011

Christmas Eve

I think I like Christmas Eve as much or more than Christmas Day.  The excitement and anticipation, the fun last minute craziness, the candle light service at church....

So what did/do we do on Christmas Eve?  The day is spent making some last minute gift adjustments because, well, we tend to be last minute people.  I love Christmas Movies like Elf or Christmas Story playing in the background , although this year we went more on the side of football.  Then we have supper and head to church.  It was great to see all the kids together singing Christmas carols in church and watch the wonder in Ayden Jane's eyes at the candle light.  Mckenna took her down front for the children's story.  The pastor asked for all the kiddies to come on down.  Later we discovered that Ayden Jane had loved going down front because she got to be a kiTTy.  Yes, it took me a little while to make the connection!!

When we came home it was time to open the traditional one gift on Christmas Eve and bake lots of cookies for Santa.  It was REALLY hard for Ayden Jane to handle the whole one gift thing.  We have had presents under the tree for quite some time and Ayden Jane has been great about leaving them alone.  Once she got started though she was hooked!  No worries, she opened a couple others and all was well.

After we put Ayden Jane to bed with stories... of Christmas flowing through her head it was time for the rest of us to play cards.  It was hilarious!  It is fun now that Mckenna is old enough to really hang with us.  We played a rousing game of UNO with lots of crazy extra moves to keep it moving really fast.  It don't think we have laughed so hard in a long time.  We kept saying 'last hand' but continued on anyway.  It had to be 11 before we ever sent Mckenna off to bed.  Gary has instilled an enjoyment of board games and card games and good old fashioned fun in all of our kids.  He has played games with them since they were little and can manage to take any game (even if it was meant for much older kids) and find a way for them to play.  It is not often any more that all of us are home and can play games together so it was a little extra special.  I have a feeling that when these kids get together as adults, we just might just find them catching up with one another over a good game of cards.

All the fun of the evening gave Santa a very late start, but when has Santa ever gotten any sleep on Christmas Eve?

Wednesday, December 21, 2011

Fiddlesticks

We have the little elf from Elf on the Shelf.  Ayden Jane was not so into it the first few mornings.  She had a hard time looking for him for more than a second and wanted us to tell her where he was.  Basically, she did not see the fun in the whole thing.

We have since read the book several times and she is fascinated with him!  She about had a nervous breakdown when Mckenna touched him.  Every day now she gets sooo excited to find him.  I think she will really miss him when Christmas is over.  Glad some holiday traditions have nothing to do with food.

Monday, December 19, 2011

Christmas Vacation

Ayden Jane is having a little trouble understanding why, if Kayla is home, school is out, the decorations are up... it's not Christmas yet!  She is not a fan of sleeping in or having days without school.  (yes, the opposite of the other 3!)  We are taking it one day at a time, finding fun things to do.  Luckily the weather has been very cooperative and we have been able to go to the playground, take walks and generally play outside a lot.

We have had a few holiday related challenges food wise.  At church yesterday the preschool kids had a birthday party for Jesus.  I get it.  It is a cute way to get the point across, but the food related items were a bit much.  I had packed a usual snack of nuts for AJ.  Kayla picked her up from her class and said that she was seated with an untouched, icing loaded cupcake in front of her!  She's never had one so I am not sure what she was thinking as she looked at it.  When Kayla talked to her, AJ just told her excitedly that she had a cupcake for Mckenna!  Have I mentioned she amazes me?  She came home and went straight for the dark chocolate for her treat too.  I was good with that.  I figure she sat there, stared at a cupcake with no other treat in reach, did not complain and waited patiently until she got home!

On the health front, I am happy to say that so far she has stayed healthy.  Woo Hoo!  She has been great behavior wise and looks better each day.  She is back to hungry at appropriate times helping to choose appropriate foods and totally satisfied when done.  I even had her at the pool yesterday and another mom commented on how athletic she was!  Part of me wanted to hug her and tell her how hard we have worked for years... I wanted her to know the joy of watching AJ grow and accomplish such great things.  I wanted her to feel the amazement of the blessing of those moments...  I just smiled though, and politely agreed with her.  Never quite sure when to spill forth and when to just smile...

  

Saturday, December 17, 2011

Kayla's Home!!!

Kayla came home and her first order of business was a 'Kayla Day' for Ayden Jane.



It doesn't get any better...

Friday, December 16, 2011

Carnitine Craziness

The other day when I received AJ"s lab results, the carnitine was still pending. Now our history with carnitine is that we supplemented but the blood work last April showed it to be low. We could have tried to increase the dosage, but her dose was already pretty good for her weight. Instead we decided to mix the forms of carnitine a bit to see if we could get a better uptake from it. I went from 1 cap a day of carnitine fumarate 500 (CF) to 1/2 cap of CF and 1/2 cap of carnitALL 600. So, all in all, not a big increase in quantity. The CarnitALL has a mixture of carnitine including CF, but the big change is that it has some acetyl carnitine. Well, we went from low to just barely out of range high. Perfect!

It just shows again how her little system just has trouble sometimes absorbing certain nutrients as well as using them. The iron, one form changed nothing, the other worked wonders. B12- the forms seem to help differently... I guess I'm a bit geeky as I find it fascinating and wish I could understand the whys! In the end, I am just happy to have options and doctors who are willing to guide my crazy ideas.

Monday, December 12, 2011

Lab Results

Ayden Jane's lab results are in. On one hand they are awful. On the other, there is a lot to learn from them.

Ayden Jane's IGF-1 level is through the roof! Upper limit for reference range for her age is 284 and her IGF-1 came back 521! We did a few other tests and there are clues throughout that show that Ayden Jane has just not yet recovered fully from being sick. The poor kid!

I suppressed my first inclination to ... PANIC! at the idea that her IGF-1 is so high. I took a deep breath, thought through all the labs and e-mailed them to Dr. Miller.

I have to say that when we had them done on Tue. I thought that Ayden Jane was back to her old self. This weekend I would have to say there have been significant improvements even since Tue. in behavior, attention span, interest in food, sleeping.... More proof that this kid is having a hard time putting the illness behind her completely.

In the end I think there is just a lot to be learned from the whole thing. Ayden Jane has always shown a bit of this whole mess when she gets sick, but it is usually short lived and she returns to her old self. We saw when she was tiny that little illnesses just took her body a long time to fully recover from. Now we can see it in lab work as well and know that I am not just crazy and thinking I see things!

Basically, Dr. Miller explained it something like this: Illness causes insulin resistance due to inflammation in the body, so she felt more hungry (inflammation = blocked receptors for insulin in muscles, liver, and brain = high insulin levels in the body = low blood sugars when insulin peaks at inappropriate times = insulin resistance = brain doesn't get complete message of satiety = increased hunger) and the insulin resistance causes increased insulin levels in the body which increase IGF-1 levels which is why hers are so high.

So, my next question was what to do in the future to keep this downward spiral from tumbling out of control? One possible answer is that a steroid should be given (likely at a minimum dose) when she first shows signs of illness to keep the inflammation under control and stabilize blood sugars. I need to ask if this is all related to CAI issues in PWS or if this is just a quirky Ayden Jane thing.

We plan to rerun the labs after the Holidays. Dr. Miller recommended to have her healthy for 2-4 weeks to be sure the labs are valid. Here's hoping for a healthy Christmas!

Wednesday, December 7, 2011

Ginger Bread House

At preschool today, Ayden Jane's class decorated ginger bread houses. Mrs. Jai made little houses out of graham crackers and icing. The kids were given bowls of candy and bowls of icing to use as glue. Now, a PWS parent might think this was a completely inappropriate project. And for some kids with PWS, it may have been. I have to say, however, that Mrs. Jai told me ahead of time, picked a day I was sure to be able to come to help and then set the whole thing up for success.

She started by explaining to the whole class how they were to decorate the houses. She showed them how the icing was our glue and to use the knife (plastic of course) to put it on the house. She told all the kids that the candy was to decorate the whole house. She told them not to eat the candy while they were decorating and she would give them a piece when they were done. Ayden Jane was at a table for 2 with a little friend and me to assist.

The girls had a great time and I can honestly say that I did not even have to tell the girls once not to eat the candy. They were all about the decorating! It was a great OT project as it was not easy for Ayden Jane to use the knife to get the 'glue' out of the bowl and then blob it on the house where she wanted. In the end it was great fun, stress free and when the teacher gave the kids a piece of candy at the end, AJ had a piece of dark chocolate and never even mentioned all the bright colored candy (and there was A LOT).



Just one of those days that seemed way more 'typical' than PWS. I love those days...

Saturday, December 3, 2011

Fall

I know it's December, but here are some visions of Fall.

The pumpkin patch with St. Peter's!


Thanksgiving Feast at St. Peter's


Playing in the leaves with Mckenna.


Crawling through,


Loving being buried


Mckenna just being Mckenna...


Thursday, December 1, 2011

What Did You Say?

Glad to say that Ayden Jane has continued to be her generally happy self. Looks like we have put this yuck behind us for good. Now, we have to do a bit of food work to get back to our lean self. Ayden Jane is definitely carrying a couple of extra pounds. It does not slow her down and I don't think it is a trend other than from being sick. I do think I need to get rid of them, or at least have her maintain and grow into the extra pound or two. I am not going to do much of anything other than maybe try to cut a few bites here and there for now. Next week we will finally get the chance to test her gh levels... so depending on what happens with that I may change my plan. For now, I am just glad to have my sweet, silly little girl back.

On another note, Gary has been telling me he thinks we need to get Ayden Jane's hearing checked. It drives him crazy how she says what, pretty much every time you tell her something. Thing is, she is saying what before you even finish. Also, I have started to answer the 'what' with my own question. What did I just say? She can 80% of the time tell me what I just said. She has not given herself time to process whatever was said so she is already saying 'what'. But it is not because she didn't hear it. Now as to the processing issue? It may be a bit slow, but I think it is more likely that Ayden Jane has just developed a habit of saying 'what' or 'why' to make sure she stays involved in the conversation until she can form the ideas in her head into words.

The other one with this is the asking repeatedly. For example, she will ask in the morning about what she has that day. The more things listed for the day the happier she is. At some point before we head to school I will give her the run down. We will take this weeks busiest day as an example. Ayden Jane had school, 9-12 then was staying for 'lunch buddies' until two. (Lunch buddies is her favorite thing on the planet) Noah picks her up and takes her home and puts her down for a nap with Daddy (who is already sleeping) When she wakes up she has horses and then this past week we went from horses to Noah's basketball game. As I tell her everything planned she jumps up and down, repeats them... 2 min. later she asks, do I have lunch buddies today? 2 min. later she asks do I have lunch buddies today?.... You get the picture.

So, here is how I have started dealing with it. I will ask her what I told her when she asked the first time. She will answer me with the correct answer. I then tell her she doesn't need to ask anymore because mommy will not change the plan without telling her. She jumps up and down and skips away without asking again.

Not sure that it is totally a PWS thing, but I think a typical 4 year old thing with a dash of PWS anxiety sprinkled on top.